Purpose: The Am I ON TRAC for Adult Care questionnaire, a measure of readiness for transition from paediatric to adult care for youth with special health care needs, has both youth and parent versions. The purpose of this study was to examine the concordance between youth and parent ON TRAC questionnaire scores and responses.
Methods: During clinic appointments 200 adolescents ages 12-19 and their parents/guardian (n = 191) were recruited from waiting rooms of four outpatient clinics (diabetes, neurology, gastrointestinal, cardiology) at BC Children’s Hospital, Vancouver for a study of transition measures. Participants completed a study package, which included demographic information and the Am I ON TRAC for Adult Care questionnaire. The ON TRAC questionnaires consist of a knowledge scale and behaviour index. The youth and parent questionnaires ask youth and parents respectively to report on the youth’s health and self-care related knowledge and behaviour. Each youth-parent dyad was treated as a matched pair and dependent t-Tests were performed to examine the concordance between youth and parent ON TRAC scores and item responses.
Results: Of the 162 youth-parent dyads that were examined most accompanying parents were female (77%), 54.5% were accompanying sons, and the parent reported mean youth age was 15.2 (SD = 1.9). Participants were distributed across the clinics, with 37% from diabetes, 27% cardiology, 27% gastroenterology, and 9% neurology. Results from dependent t-Tests of ON TRAC knowledge and behaviour scores found on average, youth scores were significantly higher than parent scores, i.e., youth reported they possessed more health and self-care knowledge (t(152) = 3.32, p =.001, r = .26) and consistently engaged in health care behaviours more frequently (t(161) = 4.66, p < .001, r =.34) than their parents reported. Dependent t-tests were also performed for each individual item. Of the 22 ON TRAC items, 17 had higher youth mean scores and 5 had higher parent mean scores, but only 8 items had significantly different mean scores; for 7 of these, youth had the higher mean scores reporting greater knowledge about their medications and consistently taking medications on their own, getting to appointments as well as contacting clinics when symptoms worsen, asking health care providers health related questions more frequently, and thinking beyond high school. Only one item, “I talk to friend(s) about my problems or worries,” was rated higher by parents. There was a wide range in youth-parent difference scores, and extreme differences between youth and parent scores (> 2 SD) were identified for 5.2%, 5.5%, and 3.1% of the knowledge, behaviour and cut-off scores respectively.
Conclusions: Youth with chronic conditions and their parents appear to have different assessments of adolescents’ health-related knowledge, self-management skills and consistency of self-care behaviours. Using both youth and parent versions of the ON TRAC questionnaire could help clinicians initiate important conversations between adolescents and their parents about the youth’s level of health-related knowledge, self-management skills and behaviours, and where large discrepancies in assessment exist between them, clarify potential differences in perspective. Such conversations could be pertinent to preparing adolescents and their families for the transition to adult medical care.
Sources of Support: Canadian Institutes of Health Research #CPP86374.
